RESUMEN
RESEARCH QUESTION: The study examines the ethical, legal, and social implications of fertility preservation, highlighting its importance across oncofertility, elective egg freezing, and posthumous assisted reproduction, as well as its impact on transgender individuals undergoing gender-affirming surgeries. DESIGN: A comprehensive analysis of 600 articles, focusing on a diverse range of disciplines, including bioethics, psychology, and sociology, to explore public and healthcare professionals' knowledge, patient experiences, and regulatory constraints. RESULTS: The body of literature is growing, indicating increasing recognition of FP's significance. Key themes included the centrality of counseling and informed decision-making, especially in oncofertility and EEF, and ethical debates surrounding informed consent and the autonomy of involved individuals. The analysis underscored a western-centric bias in current research, emphasizing the need for more inclusive and culturally sensitive studies. CONCLUSIONS: The study calls for a nuanced understanding of FP, advocating for policies that consider ethical, cultural, and social dimensions. It suggests the necessity for interdisciplinary research to address identified gaps, particularly in understanding non-Western perspectives and ensuring equitable access to FP services globally. Moreover, the review emphasizes the importance of integrating patient-centric approaches and ethical frameworks to guide FP practices and policies, ensuring they respect diverse values and meet individuals' needs.
RESUMEN
RESEARCH QUESTION: This scoping review investigates the Ethical, Legal, and Social Implications (ELSI) of gamete donation, a critical facet of Assisted Reproductive Technologies, by analyzing the evolving research scope, methodological approaches, and the geographical skew in the literature. Despite the increased global uptake of donor gametes, current scholarship predominantly emanates from Western contexts and focuses on majoritized groups. This bias constrains the universality of research findings and limits their applicability across varied legal, cultural, and social contexts, underscoring a need for broader inclusivity. DESIGN: We addressed 867 pivotal articles published between 1999 and 2019. RESULTS: Our analysis reveals a discernible escalation in research volume, with 62% based on empirical research. The intellectual landscape unfolds into four dominant clusters: Regulatory Frameworks, Incentives, and Access; Family Dynamics and Genetic Linkages; Identity and Privacy in Donor Conception; and Cultural and Societal Attitudes towards GD. Each cluster highlights nuanced dimensions of gamete donation, from regulatory intricacies and psychological welfare to identity ethics and cultural perceptions. CONCLUSION: Our findings advocate for a shift towards more globally representative and methodologically inclusive research. By integrating diverse cultural narratives and expanding geographical breadth, future research can offer holistic understandings of gamete donation, fostering equitable and culturally resonant practices and policies worldwide.
RESUMEN
PURPOSE: Preimplantation Genetic Testing (PGT) has attracted considerable ethical, legal, and social scrutiny, but academic debate often fails to reflect clinical realities. METHODS: Addressing this disconnect, a review of 506 articles from 1999 to 2019 across humanities and social sciences was conducted to synthesize the Ethical, Legal, and Social Implications (ELSI) of PGT. This review mined PubMed, WoS, and Scopus databases, using both MeSH terms and keywords to map out the research terrain. RESULTS: The findings reveal a tenfold increase in global research output on PGT's ELSI from 1999 to 2019, signifying rising interest and concern. Despite heightened theoretical discourse on selecting "optimal" offspring, such practices were scarcely reported in clinical environments. Conversely, critical issues like PGT funding and familial impacts remain underexplored. Notably, 86% of the ELSI literature originates from just 12 countries, pointing to a research concentration. CONCLUSION: This review underscores an urgent need for ELSI research to align more closely with clinical practice, promoting collaborations among ethicists, clinicians, policymakers, and economists. Such efforts are essential for grounding debates in practical relevance, ultimately steering PGT towards ethical integrity, societal acceptance, and equitable access, aiming to harmonize PGT research with real-world clinical concerns, enhancing the relevance and impact of future ethical discussions.
Asunto(s)
Pruebas Genéticas , Diagnóstico Preimplantación , Humanos , Diagnóstico Preimplantación/ética , Pruebas Genéticas/ética , Pruebas Genéticas/legislación & jurisprudencia , Femenino , EmbarazoRESUMEN
PURPOSE: A significant portion of the research on assisted reproductive technologies explores ethical, legal, and social implications. It has an impact on social perceptions, the evolution of norms of clinical practices, regulations and public funding. This paper reviews and maps the geographical distribution to test the hypothesis of geographical concentration and classifies the output by fields and topics. METHODS: We queried PubMed, Scopus and the Web of Science for documents published between 1999 and 2019, excluding clinical trials and medical case reports. Documents were analyzed according to their titles, abstracts and keywords and were classified to assisted reproductive fields and by Topic Modeling. We analyzed geographic distribution. RESULTS: Research output increased nearly tenfold. We show a trend towards decentralization of research, although at a slower rate compared with clinical assisted reproduction research. While the U.S. and the U.K.'s share has dropped, North America and Western Europe are still responsible for more than 70%, while China and Japan had limited participation in the global discussion. Fertility preservation and surrogacy have emerged as the most researched categories, while research about genetics was less prominent. CONCLUSIONS: We call to enrich researchers' perspectives by addressing local issues in ways that are tailored to local cultural values, social and economic contexts, and differently structured healthcare systems. Researchers from wealthy centers should conduct international research, focusing on less explored regions and topics. More research on financial issues and access is required, especially regarding regions with limited public funding.
Asunto(s)
Reproducción , Técnicas Reproductivas Asistidas , Humanos , Atención a la Salud , Europa (Continente) , América del NorteRESUMEN
PURPOSE: Research about ethical, legal, and social implications (ELSI) of assisted reproductive technologies (ART) is influenced by cultural and value-based perspectives. It impacts regulations, funding, and clinical practice, and shapes the perception of ART in society. We analyze trends in the global literature on ELSI of ART between 1999 and 2019. As most output is produced by North America, Western Europe, and Australia, we focus on international research, i.e., academic articles studying a different country than that of the corresponding author. METHODS: The corpus, extracted from PubMed, Web of Science, and Scopus, includes 7714 articles, of which 1260 involved international research. Analysis is based on titles, abstracts and keywords, classification into ART fields and Topic Modeling, the countries of corresponding author, and countries mentioned in abstracts. RESULTS: An absolute increase in the number of international studies, and their relative proportion. Trends of decentralization are apparent, yet geographic centralization remains, which reflects an unequal distribution of research funds across countries and may result in findings that do not reflect global diversity of norms and values. Preference for studying conceptual challenges through philosophical analysis, and for fields that concern only a portion of ART cycles. Less attention was dedicated to economic analysis and barriers to access, or to knowledge of and attitudes. International studies provide an opportunity to expand and diversify the scope of ELSI research. CONCLUSION: We call on the research community to promote international collaborations, focus on less explored regions, and divert more attention to questions of cost, access, knowledge, and attitudes.
Asunto(s)
Técnicas Reproductivas Asistidas , Humanos , Europa (Continente) , América del Norte , Australia/epidemiologíaRESUMEN
RESEARCH QUESTION: We analyzed two questions. First, the effectiveness of public Assisted Reproductive Technologies (ART) in Spain compared with private ones, measured by the time since initiating ART treatment until achieving pregnancy, accounting for age and socioeconomic factors. Second, socioeconomic determinants of access to ART, referring primarily to financial means derived by employment, income, and wealth. DESIGN: We applied statistical models on data extracted from the national Spanish Fertility Survey from 2018. The first topic was analyzed by competing risk survival analysis conducted on a sample of 667 women who initiate ART treatment since 2000. The second, by a Bivariate Probit model conducted on a sample of 672 women older than 41 years who required ART services. RESULTS: The first analysis raised that throughout the treatment, patients treated exclusively in private clinics had on average a higher cumulative incidence of becoming pregnant compared with patients who approached public clinics. The second analysis raised that both higher household equivalent income and higher education increase the likelihood of accessing ART in a private clinic and decrease the tendency of accessing public clinics or failing to access any service. Moreover, being single decreases the likelihood of accessing public clinics or ART services in general. CONCLUSIONS: Long waiting periods could be the main reason for the lower incidence of getting pregnant in public healthcare, explaining why patients choose private over public care. We develop a broader discussion over the extent of Spanish public funding of ART, the unequal medical outcome, and potential options for optimization.
Asunto(s)
Accesibilidad a los Servicios de Salud , Técnicas Reproductivas Asistidas , Femenino , Accesibilidad a los Servicios de Salud/estadística & datos numéricos , Humanos , Embarazo , Técnicas Reproductivas Asistidas/estadística & datos numéricos , Factores Socioeconómicos , España , Resultado del TratamientoRESUMEN
PURPOSE: We have been inquiring into the diffusion process of reproductive genetic services (RGS) and the viability of geneticization in human reproduction. METHOD: A 2-round modified-Delphi survey was applied amongst Israeli and Spanish experts to analyze regulatory attitudes and expectations about the future applications of RGS. We argue that an explanation of RGS diffusion based on a 'technology-push' impulse should be complemented by a 'demandpull' approach, which underscores the importance of regulatory frameworks and demand-inducing policies. The diffusion of RGS is advancing in a 'spiralshaped' process where technology acts as a cause and effect simultaneously, modulating social acceptance and redefining the notions of health and responsibility along the way. RESULTS: We suggest that there is a 'grey-zone' of RGS regulations regarding four procedures: the use of germline genome modification (GGM) for severe monogenic disorders, preimplantation genetic testing (PGT) for detection of chromosomal abnormalities, PGT for multifactorial diseases, and PGT with whole-exome screening. CONCLUSIONS: Although far from the geneticization of human reproduction, our findings suggest that, since techno-scientific imaginaries tend to shape regulations and thus favor the diffusion of RGS, policymakers should pay attention to those procedures by focusing on good practices and equity while providing sound information on potential risks and expected success rates. A broad and inclusive societal debate is critical for overcoming the difficulty of drawing a clear line between medical and non-medical uses of genetic selection and engineering while searching for the right balance between allowing reproductive autonomy and protecting the public interest.
Asunto(s)
Edición Génica , Diagnóstico Preimplantación/tendencias , Reproducción/genética , Técnicas Reproductivas Asistidas/tendencias , Femenino , Pruebas Genéticas/tendencias , Genoma Humano/genética , Células Germinativas/metabolismo , Células Germinativas/patología , Humanos , Masculino , Embarazo , Servicios de Salud Reproductiva/tendencias , Medicina Reproductiva/tendenciasRESUMEN
PURPOSE: The market of assisted reproductive technologies (ARTs) is rapidly evolving, raising growing ethical and social dilemmas. This paper compares the regulatory responses to technological and market developments in Israel and Spain, both intensive users of ART. We identify strengths and deficiencies in the regulation of ART in these two countries. METHODS: We developed a conceptual framework to classify the factors affecting regulations and priority setting, and applied it using a Delphi survey combined with in-depth interviews. We selected two panels of experts from various fields, trying to simulate the bioethics committees of Israel and Spain. RESULTS: ART is often wrongfully perceived as a solution to age-related infertility. Both panels embraced alternative solutions. The impact of private commercial interest on regulations is resulting in excessive practices such as the repeat of ineffective cycles and the push of sometimes unnecessary treatment add-ons. Our findings show experts dissatisfaction with the regulations of donor-eggs concerning reimbursement and registries in both countries. CONCLUSIONS: The adequacy of ART to solve age-related infertility should be confronted with alternative approaches, with emphasis on the distribution of accurate information. The magnitude of ART markets, particularly the use of donor-eggs, should raise the need for additional societal debate and the reform of regulations. The impact factors analysis leads us to question the current regulatory framework, which could be improved by nominating a non-governmental statutory central regulatory agency in Israel and by reforming the Spanish agency.